Questions. ><'

[Ashkir]

Hello folks! Seems like you all have quite some experience! I'm nineteen years old and going in for my third open heart surgery; but this time isn't removing tissue but replacing my aortic valve. I been doing quite some research on the valves and talking to the companies that makes them in the United States (I'm a Californian) and pretty much decided what replacement I'd choose since the doctors won't suggest one (unethical to their rules apparently).

My questions are:

+ In the recent years metal detectors sensors have been greatly increased; I seen some that can detect a cassette tape; I am wondering if these increased security measures will go off with the mechanical valve? Some airports and travel destinations I seen even has a rod they use to detect metal. It's always went off on a medical bracelet I had.

+ What would be the main restrictions on traveling? I live in a family that loves to travel mainly by car. But sadly if I go with my dad I'd be exposed to extreme heat at times (going across the desert AC doesn't help) would this be disadvised?

+ Diet? I rarely eat meat and fruit now; I gave up meat as a choice to take a stand when I was a young teenager and still am that way today and doctors advised me to stay away from fruit. I eat a lot of pasta and vegetables and at time sweets. Would there be any drastic changes in this?

+ Drinks; I love drinks. Tea, soda (I don't do alcohol); would there be any new limitations on these? I do drink a large amount of water as well.

+ I live in the outskirts of Bakersfield, CA because my dad is a manager of an apartment chain and he lets me stay in the manager's apartment which is upstairs above his main office; should I ask if I can move downstairs? His friends work for him and helps bring up furniture and stuff he says if needed they can carry me up/down the stairs. Any thoughts upon these?

+ Advice? Yeah; I want some. My surgery is happening about four hours away at Children's Hospital in Madera and is scheduled in August. I have several big name doctors looking into my case, Kumar, doctor of the year by US government 2003, chief researcher and surgeon of heart center in Bakersfield and top surgeon at Anderson UCLA. (http://www.goodfamilygoodheart.com/kumar); Jue of Children's Hospital, chief cardiologist and board of directors once of Fresno's Heart Board. And several other cardiologist I cannot recall the name of and some don't even speak English or have heavy accents of European countries. I believe I'm in good hands but I still want advice. And yes, I'm really nineteen.

 

[Karlynn]

Welcome!

-Mechanical valves don't set off metal detectors.
-The travel depends more on your overall health and not the type of valve you have. There are no travel restrictions with any valve type.
-As long as you keep your diet somewhat consistent if you go mechanical and are on Coumadin, or even if you go tissue and end up on Coumadin for Afib, you always dose your diet and not diet your dose. (I eat what I want and never give it a thought.)
-It probably wouldn't hurt to move downstairs for part of your recovery - if you need to go up and down stairs a lot in order to access daily needs. Otherwise - if it's a self-contained apartment - probably no need to move.

Best wishes!

 

[dick0236]

In answer to the questions you've posed, I doubt that having valve relacement would cause any changes to your current lifestyle. In my case, I have flown many times without setting off alarms and have traveled much without climate or other geographic problems (sometimes local food and drink screws up INR levels, but that is easily corrected). My diet has never required any modification and my lifestyle has never required restrictions. Climbing stairs should be no challenge...there are many on this forum that climb mountains and run marathons. I'm not one of them

Most who have this surgery find that their life improves "all the way around".

 

[Diane]

Ashkir,
You didn't say what your diagnosis is but since you have already had 2 OHS and will be having your 3rd OHS at Children's, I am guessing that you have a congenital heart defect.

I live in Madera and I have Tetrology of Fallot. I had my Pulmonary Valve replaced 3.5 years ago at Stanford. The surgeon that did my surgery at Stanford is Dr. Frank Hanley and he goes to Children's Hospital in Madera once a week to do surgeries there. It is my understanding that Dr. Hanley is one of the top surgeons for adults with CHD. I went to Children's for a follow-up visit about 10 days after discharge from Stanford. I saw Dr. McDonald who is Dr. Hanley's assistant surgeon at Children's. You might want to consult with Dr. Hanley and/or Dr. McDonald.

You might also want to check out the Adult Congenital Heart Association at www.achaheart.org. You are coming into adulthood and should be transitioning to an Adult Congenital Heart Specialist soon. There are several young members that are in their early 20's that you might enjoy talking to.

Let me know if I can answer any questions for you.

~Diane

 

[Lynlw]

Hi Ashkir, My son is 20 but had surgery last year to have part of his pulm artery replaced. He isn't online much this week, but if you email me, I'll pass on any messages. I second Diane's suggestion about also checking the forum at adults w/ CHD. Lyn

 

[Philip B]

Answers

Answers

Airport Security? My valve or possibly the wires which were used to put my chest back together set off the metal detectors at Denver International Airport every time I fly out of there. Interestingly, I haven't set off metal detectors in any other airports (including airports in Mexico). I think they set the detectors differently at different airports. My wife suspects the DIA TSA guys have the detectors set on sensitive mode when I go through to give them an excuse to squeeze my butt.

Travel? Other than receiving too much attention from the DIA TSA guys, I've not experienced any negative issues associated with travel.

Diet? I used to rarely eat vegetables. I have increased my vegetable intake since AVR surgery, but I generally just eat what I want.

Drinks? Again, no restrictions here, but do you realize you'll feel better if you stop drinking soda pop. I gave it up two years ago, immediately lost five pounds, and haven't missed it at all. There's lots of stuff out there (including water) that has less sugar and other junk in it.

Where to live? Everyone seems to have a different experience with the recovery & rehab thing. Some experience difficulty with stairs following surgery; others have no problem with doing a few stairs immediately post-op. Why move? Why not hang at your dad's place for a few days if you need to before you tackle the stairs.

Advice? What exactly do you want advice about? The folks here love giving advice. Just give us a topic or some questions.

Opinions will vary, but AVR surgery is about being able to move on with your life. It shouldn't be about adding restrictions to your life.

-Philip

 

[briansmom]

My son got an On-X valve when he was 17 - no travel problems so far. We are off-roaders so he spends a fair amount of time in the desert. I worry about heat, but that is only because his heart was severely damaged before they figured out what was wrong with him so he does not have full heart function now. We chose the On-X because there is a possibility that it will not require as much anti-coagulation in the future. Let me know if you have any specific questions for my son.

 

[Cooker]

Ashkir....welcome to the zoo....you have come th the right place for information and support......as far as humans go, there is not a nicer bunch anywhere

 

[MandyMV]

Ashkir, my only advice in addition to everyone else is that if you end up requiring coumadin you should definitely look into getting a home testing monitor for checking your INR levels. If you travel a lot this will give you a bit of freedom from having to go to labs on the road etc. Good Luck

 

[Ashkir]

I received a mechanical valve on the day of August 13, 2008. The surgeon was going to try and repair my valve; but my valve ripped in half because of scar tissue overgrew and my inominate vein ripped. They successfully patched the left verticle of the heart to make the chamber smaller since it expanded because the original valve I had did not close correctly so it had to push more blood. The inominate vein was repaired as well. But the vavle wouldn't hold now so I have a mechanical valve from St. Jude Medical.

I was told I was lucky; my six hour surgery in one of the top hospitals turned into fifteen hours. A few days later my lung collasped. I was on the ventalator way too long; but they didn't have a choice, I wouldn't take a breath myself for almost a week. They kept me in the hospital for twenty-seven days. ICU for two weeks and in a regular room for two weeks before releasing me. My blood levels are acting up but are starting to normalize the doctor felt it might be better in a familar enviroment.

Also, I found out I have to gain twenty pounds...I keep staying the same =/. The mechanical valve I got, I cannot even hear. =D. It's working, but I'm hard of hearing so yeah.

I want to thank you guys for your vast amount of experiences, it has really helped me.

Oh, if the valve doesn't help the left side of my heart recover within a few months I'd be put on the FDA list for request for the Berlin Heart and the transplant list.

Oh, my diet is regular. They want me to keep eating like I have been as for some reason I never once was overweight in my life so they trust me enough. I'm on four medications for rest of my life, a allergy one, a blood pressure one, the comuative and a fungus medication. They also think my blood is missing a major factor of clotting (one of the twelve) if that test comes back positive I may need shots to replace that factor. They said the test takes an extremely long time to come back and it's a funny test.

But I'm alive. :]. This surgery costed two million usd. The surgeon said I officially have the quietest mechanical valve he has installed. He said in babies the valve is extremely loud. Mine is growing louder if I have hearing aids (I cannot hear it through that usually) or the volume stethoscopes.

 

[Phyllis]

I'm glad you reported back to us and so sorry that you had such a hard time. I will keep you in my prayers that the left side of the heart recovers and you have a complete recovery.

 

[hall]

Sorry you had such a hard time. I am hoping your left side of your heart recovers. Prayers for you.

 

[briansmom]

Thanks for posting. It seems that you had a pretty hard time. Brian also faces a possible future transplant. Take very good care of yourself, eat a low sodium diet and do your rehab (that's me in Mom mode!).

 

[WayneGM]

Thanks for the update, but sorry you had such a hard time of it. Best wishes.

 

[skeptic49]

Thanks for posting. I am sorry to read of the difficulties. Best wishes going forward and the hope that your heart heals.

Jim

 

[Jkm7]

So happy to hear you are home but sorry all you went through. What a hard time but it is behind you now and you look forward to getting better and better. Be patient with yourself. It will take time to recover but you will.

You seem to have a very good attitude and that will serve you well.
Please check in with us and let us know how you are doing. We worry.

 

[Ashkir]

Doctor says no rehab. xD. I'm too hyper. >_>. I just don't function in mornings cause I never do but I always been an avid walker, I have very, very restless legs always have and probably will have em for a long time.

Mom mode, xD, made me laugh. My mom will probably call me like crazy when I return to my apartment on the otherside of the state (in Bakersfield ^^ or Temecula depending on the time of year it is). Doctor wants my diet normal still, and plus I have to gain more weight. At least normal soda and salsa filled diet can continue. ^^